Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

NICE is also producing a guideline on decision making and mental capacity, which will provide further details on how practitioners can support decision-making for people who may lack capacity now or in the future.

1.1 Involving people living with dementia in decisions about their care

Involving people in decision-making

1.1.1 Encourage and enable people living with dementia to give their own views and opinions about their care.

1.2.3 When using cognitive testing, use a validated brief structured cognitive instrument such as:

the 10-point cognitive screener (10-CS)

the 6-item cognitive impairment test (6CIT)

the 6-item screener

the Memory Impairment Screen (MIS)

the Mini-Cog

Test Your Memory (TYM).

1.2.4 Do not rule out dementia solely because the person has a normal score on a cognitive instrument.

1.2.5 When taking a history from someone who knows the person with suspected dementia, consider supplementing this with a structured instrument such as the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) or the Functional Activities Questionnaire (FAQ).

1.2.6 Refer the person to a specialist dementia diagnostic service (such as a memory clinic or community old age psychiatry service) if:

reversible causes of cognitive decline (including delirium, depression, sensory impairment [such as sight or hearing loss] or cognitive impairment from medicines associated with increased anticholinergic burden) have been investigated and

dementia is still suspected.

1.2.7 If the person has suspected rapidly-progressive dementia, refer them to a neurological service with access to tests (including cerebrospinal fluid examination) for Creutzfeldt–Jakob disease and similar conditions.

1.2.22 Do not rule out dementia with Lewy bodies based solely on normal results on 123I‑FP‑CIT SPECT or 123I‑MIBG cardiac scintigraphy.

Further tests for frontotemporal dementia

1.2.23 If the diagnosis is uncertain (see recommendation 1.2.14) and frontotemporal dementia is suspected, use either:

FDG-PET or

perfusion SPECT.

1.2.24 Do not rule out frontotemporal dementia based solely on the results of structural, perfusion or metabolic imaging tests.

1.2.25 Be aware that frontotemporal dementia has a genetic cause in some people.

Further tests for vascular dementia

1.2.26 If the dementia subtype is uncertain and vascular dementia is suspected, use MRI. If MRI is unavailable or contraindicated, use CT.

1.2.27 Do not diagnose vascular dementia based solely on vascular lesion burden.

1.2.28 Be aware that young-onset vascular dementia has a genetic cause in some people.

Case finding

1.2.29 Only conduct case finding for suspected dementia as part of a clinical trial that also provides an intervention to people diagnosed with dementia.

Telling the difference between delirium and dementia in people without a diagnosis of either

1.2.30 For people who are in hospital and have cognitive impairment with an unknown cause, consider using one of the following to find out whether they have delirium or delirium superimposed on dementia, compared with dementia alone:

the long confusion assessment method (CAM)

the Observational Scale of Level of Arousal (OSLA).

1.2.31 Do not use standardised instruments (including cognitive instruments) alone to distinguish delirium from delirium superimposed on dementia.

1.2.32 If it is not possible to tell whether a person has delirium, dementia, or delirium superimposed on dementia, treat for delirium first. For guidance on treating delirium, see treating delirium in the NICE guideline on delirium.

Review after diagnosis

1.2.33 After a person is diagnosed with dementia, ensure they and their family members or carers (as appropriate) have access to a memory service or equivalent hospital- or primary-care-based multidisciplinary dementia service.

1.2.35 When people living with dementia or their carers have a primary care appointment, assess for any emerging dementia-related needs and ask them if they need any more support.

1.3 Care coordination

1.3.1 Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care.

1.3.2 Named professionals should:

arrange an initial assessment of the person's needs, which should be face to face if possible

provide information about available services and how to access them

involve the person's family members or carers (as appropriate) in support and decision-making

give special consideration to the views of people who do not have capacity to make decisions about their care, in line with the principles of the Mental Capacity Act 2005

ensure that people are aware of their rights to and the availability of local advocacy services, and if appropriate to the immediate situation an independent mental capacity advocate

develop a care and support plan, and:

agree and review it with the involvement of the person, their family members or carers (as appropriate) and relevant professionals

specify in the plan when and how often it will be reviewed

evaluate and record progress towards the objectives at each review

ensure it covers the management of any comorbidities

provide a copy of the plan to the person and their family members or carers (as appropriate).

Transferring information between services and care settings

1.3.3 When developing care and support plans and advance care and support plans, request consent to transfer these to different care settings as needed.

1.3.4 Service providers should ensure that information (such as care and support plans and advance care and support plans) can be easily transferred between different care settings (for example home, inpatient, community and residential care).

1.3.5 Staff delivering care and support should maximise continuity and consistency of care. Ensure that relevant information is shared and recorded in the person's care and support plan.

Making services accessible

1.3.6 Service providers should design services to be accessible to as many people living with dementia as possible, including:

people who do not have a carer or whose carer cannot support them on their own

people who do not have access to affordable transport, or find transport difficult to use

people who have other responsibilities (such as work, children or being a carer themselves)

people with learning disabilities, sensory impairment (such as sight or hearing loss) or physical disabilities

people who may be less likely to access health and social care services, such as people from black, Asian and minority ethnic groups.

1.4 Interventions to promote cognition, independence and wellbeing

1.4.1 Offer a range of activities to promote wellbeing that are tailored to the person's preferences.

Pharmacological management of Alzheimer's disease

1.5.2 The three acetylcholinesterase (AChE) inhibitors donepezil, galantamine and rivastigmine as monotherapies are recommended as options for managing mild to moderate Alzheimer's disease under all of the conditions specified in 1.5.5 and 1.5.6.

1.5.4 For people with an established diagnosis of Alzheimer's disease who are already taking an AChE inhibitor:

consider memantine in addition to an AChE inhibitor if they have moderate disease

offer memantine in addition to an AChE inhibitor if they have severe disease.

1.5.5 Treatment should be under the following conditions:

For people who are not taking an AChE inhibitor or memantine, prescribers should only start treatment with these on the advice of a clinician who has the necessary knowledge and skills. This could include:

secondary care medical specialists such as psychiatrists, geriatricians and neurologists

other healthcare professionals (such as GPs, nurse consultants and advanced nurse practitioners), if they have specialist expertise in diagnosing and treating Alzheimer's disease.

Once a decision has been made to start an AChE inhibitor or memantine, the first prescription may be made in primary care.

For people with an established diagnosis of Alzheimer's disease who are already taking an AChE inhibitor, primary care prescribers may start treatment with memantine (see recommendation 1.5.4) without taking advice from a specialist clinician.

Ensure that local arrangements for prescribing, supply and treatment review follow the NICE guideline on medicines optimisation.

Do not stop AChE inhibitors in people with Alzheimer's disease because of disease severity alone.

1.5.6 If prescribing an AChE inhibitor (donepezil, galantamine or rivastigmine), treatment should normally be started with the drug with the lowest acquisition cost (taking into account required daily dose and the price per dose once shared care has started). However, an alternative AChE inhibitor could be prescribed if it is considered appropriate when taking into account adverse event profile, expectations about adherence, medical comorbidity, possibility of drug interactions and dosing profiles.

1.5.7 When using assessment scales to determine the severity of Alzheimer's disease, healthcare professionals should take into account any physical, sensory or learning disabilities, or communication difficulties that could affect the results and make any adjustments they consider appropriate. Healthcare professionals should also be mindful of the need to secure equality of access to treatment for patients from different ethnic groups, in particular those from different cultural backgrounds.

1.5.8 When assessing the severity of Alzheimer's disease and the need for treatment, healthcare professionals should not rely solely on cognition scores in circumstances in which it would be inappropriate to do so. These include:

if the cognition score is not, or is not by itself, a clinically appropriate tool for assessing the severity of that patient's dementia because of the patient's learning difficulties or other disabilities (for example, sensory impairments), linguistic or other communication difficulties or level of education or

if it is not possible to apply the tool in a language in which the patient is sufficiently fluent for it to be appropriate for assessing the severity of dementia or

if there are other similar reasons why using a cognition score, or the score alone, would be inappropriate for assessing the severity of dementia.

In such cases healthcare professionals should determine the need for initiation or continuation of treatment by using another appropriate method of assessment.

1.5.9 Do not offer the following specifically to slow the progress of Alzheimer's disease, except as part of a randomised controlled trial:

diabetes medicines

hypertension medicines

statins

non-steroidal anti-inflammatory drugs (NSAIDs), including aspirin.

Pharmacological management of non-Alzheimer's dementia

1.5.10 Offer donepezil or rivastigmine to people with mild to moderate dementia with Lewy bodies.[1]

1.5.11 Only consider galantamine[2] for people with mild to moderate dementia with Lewy bodies if donepezil and rivastigmine[1] are not tolerated.

1.5.12 Consider donepezil or rivastigmine for people with severe dementia with Lewy bodies[1].

1.5.13 Consider memantine[3] for people with dementia with Lewy bodies if AChE inhibitors[4] are not tolerated or are contraindicated.

1.5.14 Only consider AChE inhibitors[4] or memantine[3] for people with vascular dementia if they have suspected comorbid Alzheimer's disease, Parkinson's disease dementia or dementia with Lewy bodies.

1.5.15 Do not offer AChE inhibitors or memantine to people with frontotemporal dementia[5].

1.5.16 Do not offer AChE inhibitors or memantine to people with cognitive impairment caused by multiple sclerosis.

1.5.17 For guidance on pharmacological management of Parkinson's disease dementia, see Parkinson's disease dementia in the NICE guideline on Parkinson's disease.

1.6 Medicines that may cause cognitive impairment

1.6.1 Be aware that some commonly prescribed medicines are associated with increased anticholinergic burden, and therefore cognitive impairment.

1.6.2 Consider minimising the use of medicines associated with increased anticholinergic burden, and if possible look for alternatives:

when assessing whether to refer a person with suspected dementia for diagnosis

during medication reviews with people living with dementia.

1.6.3 Be aware that there are validated tools for assessing anticholinergic burden (for example, the Anticholinergic Cognitive Burden Scale), but there is insufficient evidence to recommend one over the others.

1.6.4 For guidance on carrying out medication reviews, see medication review in the NICE guideline on medicines optimisation.

1.7 Managing non-cognitive symptoms

Agitation, aggression, distress and psychosis

1.7.1 Before starting non-pharmacological or pharmacological treatment for distress in people living with dementia, conduct a structured assessment to:

1.7.2 As initial and ongoing management, offer psychosocial and environmental interventions to reduce distress in people living with dementia.

1.7.3 Only offer antipsychotics[6],[7] for people living with dementia who are either:

at risk of harming themselves or others or

experiencing agitation, hallucinations or delusions that are causing them severe distress.

1.7.4 Be aware that for people with dementia with Lewy bodies or Parkinson's disease dementia, antipsychotics can worsen the motor features of the condition, and in some cases cause severe antipsychotic sensitivity reactions. For more guidance, see the advice on managing delusions and hallucinations in the NICE guideline on Parkinson's disease. Be aware that interventions may need to be modified for people living with dementia.

1.7.5 Before starting antipsychotics, discuss the benefits and harms with the person and their family members or carers (as appropriate). Consider using a decision aid to support this discussion.

1.7.6 When using antipsychotics:

use the lowest effective dose and use them for the shortest possible time

reassess the person at least every 6 weeks, to check whether they still need medication.

1.7.7 Stop treatment with antipsychotics:

if the person is not getting a clear ongoing benefit from taking them and

after discussion with the person taking them and their family members or carers (as appropriate).

1.7.8 Ensure that people living with dementia can continue to access psychosocial and environmental interventions for distress while they are taking antipsychotics and after they have stopped taking them.

1.7.9 For people living with dementia who experience agitation or aggression, offer personalised activities to promote engagement, pleasure and interest.

1.7.10 Do not offer valproate to manage agitation or aggression in people living with dementia, unless it is indicated for another condition.[8]

Depression and anxiety

1.7.11 For people living with mild to moderate dementia who have mild to moderate depression and/or anxiety, consider psychological treatments.

1.7.12 Do not routinely offer antidepressants to manage mild to moderate depression in people living with mild to moderate dementia, unless they are indicated for a pre-existing severe mental health problem.

Sleep problems

1.7.13 Do not offer melatonin to manage insomnia in people living with Alzheimer's disease.

1.7.14 For people living with dementia who have sleep problems, consider a personalised multicomponent sleep management approach that includes sleep hygiene education, exposure to daylight, exercise and personalised activities.

Parkinson's disease

1.7.15 For guidance on managing Parkinson's disease symptoms in people with Parkinson's disease dementia or dementia with Lewy bodies, see the NICE guideline on Parkinson's disease. Be aware that interventions may need to be modified for people living with dementia.

1.8 Assessing and managing other long-term conditions in people living with dementia

Sensory impairment

1.8.10 For guidance on hearing assessments for people with suspected or diagnosed dementia, see adults with suspected dementia in the NICE guideline on hearing loss.

1.8.11 Encourage people living with dementia to have eye tests every 2 years. Consider referring people who cannot organise appointments themselves.

1.9 Risks during hospital admission

1.9.1 Be aware of the increased risk of delirium in people living with dementia who are admitted to hospital. See the NICE guideline on delirium for interventions to prevent and treat delirium.

1.9.2 When thinking about admission to hospital for a person living with severe dementia, carry out an assessment that balances their current medical needs with the additional harms they may face in hospital, for example:

disorientation

a longer length of stay

increased mortality

increased morbidity on discharge

delirium

the effects of being in an impersonal or institutional environment.

1.9.3 When thinking about admission to hospital for a person living with dementia, take into account:

any advance care and support plans

the value of keeping them in a familiar environment.

1.10 Palliative care

1.10.1 From diagnosis, offer people living with dementia flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be.

1.10.2 For people living with dementia who are approaching the end of life, use an anticipatory healthcare planning process (see recommendation 1.1.12 on advance care planning). Involve the person and their family members or carers (as appropriate) as far as possible, and use the principles of best-interest decision-making if the person does not have capacity to make decisions about their care.

advice on interventions that reduce the need for antipsychotics and allow doses to be safely reduced

promoting freedom of movement and minimising the use of restraint

if relevant to staff, the specific needs of younger people living with dementia and people who are working or looking for work.

1.13.3 Consider giving carers and/or family members the opportunity to attend and take part in staff dementia training sessions.

1.13.4 Consider training staff to provide multi-sensory stimulation for people with moderate to severe dementia and communication difficulties.

1.13.5 Ensure that all health and social care staff are aware of:

the extent of their responsibility to protect confidentiality under data protection legislation and

any rights that family members, carers and others have to information about the person's care (see recommendation 1.3.5 on information sharing between different care settings).

1.13.6 Health and social care professionals advising people living with dementia (including professionals involved in diagnosis) should be trained in starting and holding difficult and emotionally challenging conversations.

Terms used in this guideline

Case finding

A strategy of actively assessing people who are at risk for a particular disease, before they present with symptoms and before there is clinical suspicion of the condition. It does not refer to situations such as assessing people for dementia after an acute episode of delirium, where clinical suspicion of dementia is likely to already be raised.

Cognitive rehabilitation

Identifying functional goals that are relevant to the person living with dementia, and working with them and their family members or carers to achieve these. The emphasis is on improving or maintaining functioning in everyday life, building on the person's strengths and finding ways to compensate for impairments, and supporting independence. Cognitive rehabilitation does not aim to improve cognition, but addresses the disability resulting from the impact of cognitive impairment on everyday functioning and activity. Rehabilitation is sometimes referred to as 'reablement'.

Cognitive stimulation

Engaging in a range of activities and discussions (usually in a group) that are aimed at general improvement of cognitive and social functioning.

Cognitive training

Guided practice on a set of standard tasks that are designed to reflect particular cognitive functions. There may be a range of difficulty levels, to fit the tasks to each person's level of ability.

Interpersonal therapy

Brief structured attachment-focused therapies for people with mild to moderate depression. These therapies are based on the idea that difficulties interacting with other people can cause psychological symptoms such as depressed mood, which then make the difficulties with interaction worse, causing a cycle. Interpersonal therapies aim to help people interact more effectively with others, and through this improve the psychological symptoms. Therapy typically focuses on relationship issues such as conflict, difficulty starting or maintaining relationships, grief and loss, and life changes.

Refer

A referral to a diagnostic service does not have to involve a clinic appointment. People can be seen in community settings (such as their home or a care home), or advice can be provided to the referrer without a formal appointment being made. The key issue is to ensure that dementia specialists are involved, both for advice on diagnosis and to ensure appropriate access to post-diagnostic support and treatment. Specialists are those with the appropriate knowledge and skills and include secondary care medical specialists (for example psychiatrists, geriatricians and neurologists) and other healthcare professionals (for example GPs, nurse consultants and advanced nurse practitioners) with specialist expertise in assessing and diagnosing dementia.

Social care terms

Specialist clinician

Specialist clinicians (for the purpose of starting and monitoring treatment with cholinesterase inhibitors and memantine) are those with the appropriate knowledge and skills and include secondary care medical specialists (for example psychiatrists, geriatricians and neurologists) and other healthcare professionals (for example GPs, nurse consultants and advanced nurse practitioners) with specialist expertise in diagnosing and treating Alzheimer's disease.

Verbal episodic memory

Episodic memories include information about recent or past events and experiences (rather than factual knowledge, or habits and skills). They may be recent, or from the distant past (remote or long-term episodic memory). Tests to assess episodic memory may use either verbal or visual material. Examples of verbal episodic memory tests include reading the person a list of words or a short story and asking them to recall this information, both immediately and after a delay.

[1] At the time of publication (June 2018), donepezil and rivastigmine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[2] At the time of publication (June 2018), galantamine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[3] At the time of publication (June 2018), memantine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[4] At the time of publication (June 2018), the AChE inhibitors donepezil, rivastigmine and galantamine did not have a UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.

[5] Note that logopenic aphasia, which has previously been included in some diagnostic guidelines for frontotemporal dementia, has now been shown to most commonly be caused by Alzheimer's disease.

[7] At the time of publication (June 2018), the only antipsychotics with a UK marketing authorisation for this indication were risperidone and haloperidol. The marketing authorisation for risperidone only covers short-term treatment (up to 6 weeks) of persistent aggression in people with moderate to severe Alzheimer's disease unresponsive to non-pharmacological approaches and when there is a risk of harm to self or others. The marketing authorisation for haloperidol only covers treatment of persistent aggression and psychotic symptoms in people with moderate to severe Alzheimer's dementia and vascular dementia when non-pharmacological treatments have failed and when there is a risk of harm to self or others. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information.